sally

Thank you for sharing your story. Your insight and effort will help many. You are to be commended on your participation in these studies especially while feeling so poorly. I read that you were dx'd with UC, our daughter also has UC. They finally found a medication that seems to be working well. They put her on Imuran & asacol after a very frightening and severe bout that landed her in the hospital for about 19 days and 20 pounds to the negative. It was a very scary time that lasted over 7 plus months they gave her that lovely drug called prednisone! It took about a year or so for her to get back to somewhat a normal state. Hopefully you are feeling fine now as well with the ulcerative colitis. Thank you again for sharing your information. Here's a pretty good link for forum for UC patients if you would like.. http://www.helpforibs.com/messageboards/ub...hreads.php?Cat=

Hi Julie have you ever tried levaquin? I had to end up taking this med for a terrible sinus infection once that other antibiotics did not clear up. Within a few days after starting levaquin I felt so much better and I experienced no side effects from it that I remember. I know sinusitis can be just awful. I came down with terrible ethmoiditis once that my nasal area swelled terribly even some in the eye area that I looked like I was punched in the nose. (I had let an infection go longer than I should have) I was put on Prednisone as well as about 45 days of antibiotics at that time and had to see the doc every few days for a check to see the progress. I knew better to let it go as I usually have chronic sinus problems but I just got tired of seeing the doc every time you turned around. It scared the pants off me that time though let me tell ya!!! I know antibiotics can sometimes disagree with your stomach, try to always take with food if it's allowed, plus just the infection alone can make you feel weak and shakey, at least for me, I notice these symptoms everytime I get one. Good luck and feel better soon.

Hi Julie, Just a suggestion but maybe what Dr. Bolognese meant was that he was pleased that you are not required to have any immediate surgery at this time, that's what I got from his statement, not that he meant you don't have a problem at all. I would just keep trying to reach his office to clarify his statement but would try not to take it to heart that he meant that you don't have the problem.. He's probably thinking of the immediate danger and was please to see your films haven't changed from the last one or something. The instability you feel can also be a result of the EDS as well to make matters worse things usually will show as somewhat normal at times on films. Even when EDSers are having the worst pain ever with a particular joint or spine or rib area (whatever is being effected at that time) xrays/mri/ may not show any abnormality what so ever. Although, this is frustrating, this doesn't reflect any thing imagined on the patients end, it's just the nature of the beast so to speak. Try not to let it get you down, I realize that when physicians question and doubt everything we say or feel it tends to make a person self doubt and feel like we are imagining the illness but you are not....so don't self doubt. EDS alone can affect so many different parts of the body in many ways that are different from even other EDSers, nothing is consistent. Plus you add in the problems of the other illnesses that play havoc on the body or complicated by the other problems and boy, it's no wonder the body doesn't know how to react or feel on any given day. You have an ever changing chronic health issue that is not imagined so don't let people or statements make you feel badly, having these type health issues can be very frustrating but also give yourself a lot of credit for getting up in the mornings and taking on the day!!!! I always remind myself that what we all deal with on a daily basis would make even the strongest person run for the hills screaming and most people could not handle what we must endure in a day just to function. So give yourself a pat on the back for your courage and inner strength. I hope you feel better soon and I haven't forgotten to email you the information, I will get it out to you shortly, I'm waiting for some quiet time to arrive on my end....scheduling etc. You have a good day and feel better soon

Hi, Just came across this while researching some hypotension stuff, thought someone else could also benefit from something listed here. There are a wide variety of links for health, nutritional, etc.... http://www.nenpl.org/links/links/health.htm http://www.nassaulibrary.org/valleyst/LINKS/healthlinks.html

Hi just read your post, sending my sympathies over the loss of your sister and well wishes to you and your family to get through this time. best wishes.

Hi, we use the purex hand sanitizer lotion...you can get it at most walmarts. It has a small amount of lotion within the purex. And we try to never touch the face.

It sounds like you did just great. You were brave indeed. feel better soon!

good luck and feel better soon

Hi Merrill, No unfortunately, it wasn't an analogy. I wish it had been because then at least he would have been showing some compassion, he was just being a smart ..... This particular physician is known for acting like this as I found out later by other people who have seen him for other things. I hadn't been diagnosed yet and he wasn't aware or interested in finding out why I was experiencing the symptoms that I was explaining to him at the time. Other than having a tremor problem he said there was no problem.....after leaving his office feeling upset and being dismissed by him and in fear of losing my job because at the time I was too ill to work, it wasn't until my children were starting showing the same symptoms/problems that we were diagnosed with the blood pressure problems and EDS. I'm just glad I didn't give up searching to find out what was wrong. It sad though that it took, oh lets see....about over 25 years to get some answers....how's that for patience? And they tell me I'm not a patient person....hehe

Although now, we as a family have wonderful docs that take of us (finally!!) and we are very fortunate indeed to have them and we let them know that often, it wasn't always the case. We've had to change many times and go through alot of physicians who were very inconsiderate and quite rude at times and seemed uncaring or maybe they were just confused as to what was going with us, who knows....at the time we were dealing with these particular docs it was most frustrating on top of being ill and scared. I think the most ridiculous statement I've ever heard from one physician is when I was attempting to explain the weak exhausting feeling that we are all SO familiar with and now know is a common symptom of this problem. But, at the time before diagnosis, on one visit to a doc I explained that I would frequently get so exhausted just carrying a small amount of paperwork from one area to another area (few feet away) in my arms that I would be weak and breathless and had to sit for hours or fall down and this only happened in the morning hours. His statement to me was...."well, if I picked up my refrigerator and carried it from one point to the other I'm exhausted and weak too". I about fell over in shock! What a nut!! I think I just sat and looked at him not knowing how to respond to that one....a lot of difference between about 3" of paperwork and refridg don't ya think? crazy!!! I think we should start a thread on the most ridiculous statements that have been said to all of us by these type docs. I can just imagine what some would say... it would at least give us all a laugh at the stupidity of it all. hang in there....

Hi Julie, about the EDS.....did you know that over 50% of EDSers who have chronic pain are treated with narcotics just to function? That should tell this doctor something. EDS causes chronic painful joints that feel non-discriptive for most people who suffer from it and severity can be debiltating. It involves multiple joints/spine/blood pressure issues/circulatory issues/eyes/ etc and chronic pain that also feels like its within the bone that is burning/stinging and or aching included and bursting outwards from within the bones/joints themselves. . This type pain can usually not be consoled with normal meds and is very hard to treat as is the chronic feature of this type pain. The bone pain itself from EDS I have not understood the exact whys but I think it makes sense because the bone matrix itself consists of collagen which is defective. I've been trying to read about this very thing and it is very confusing. Our youngest had some much damage to her bones/joints (bone marrow edema - bone brusing) due to EDS which is also a concern for EDSers and can cause excessive pain in itself without EDS on a normal person, usually from a severe injury. when our docs saw her mri's of her joints they were astonished and thought she might have bone cancer or something. We found in our situation that a good pain management and genetics doc understood more on this feature of EDS rather than a neuro doc. (our situation only) might be different for some one else though. The genetics doc explained more and gave us more insight on what to expect and how to deal with it. The PTs help with mobility issues. The chronic pain from EDS will normally not ever go away unfortunetly and is as you well know a very hard pill to swallow. If I can help with EDS information, and if you have questions please feel free to email. Surgery and recovery from it can be alot more difficult for you than most normal people

Hi Julie here are some links pertaining to chronic pain, maybe they have some helpful information for you. good luck http://www.aapmr.org/condtreat/pain.htm http://www.theacpa.org/ http://www2.rpa.net/~lrandall/ http://www2.rpa.net/~lrandall/pain5.html http://www.ninds.nih.gov/disorders/chronic...hronic_pain.htm

Julie, Don't you have EDS? or am I mistaken. If so, to experience chronic pain is a common feature with EDS and it is not in your head. Some docs don't truely know how to help someone with chronic pain and get frustrated and resort to what I consider blaming the patient routine. If possible find yourself a good pain managment doc who understands the condition that you have and can at least consider different methods of treatment such as PT and massage therapy, tens, chiro or accupunture or other methods that both of you can agree on. At the very least the physician should provide some understanding which is a big help in itself in my book and goes a long way. Best wishes and try not to let this doc upset you too much, it's only his opinion and you know what they say about opinions. take care

Hi Dayna Sorry to hear that you have these terrible headaches. Yes, my daughter had to be on medication daily to avoid her hemiplegic migraines that were constantly interupting her life. She at the time was put on by her neuro a betablocker (propranolol) and elavil. It helped her quite a bit although took a few months to finally really make a difference. It first lessened the severity and then slowed the headaches to a lesser amount within a month. She was before treatment getting these average about twice a week when younger. The only thing she remembers as a side effect was a little sedation effect if taken too late in the evening and vivid dreaming from the elavil. I didn't really like her taking the anti-depressant either but it worked wonders and the doc said it is common to use these as they help migraine sufferers. good luck

Hi Jen, Sorry for the late reply. Just wanted to also confirm what Julie said about EDS and ANS problems going hand in hand. We experience that as well and are EDSers also. we were told of this connection by a rheumy from Johns Hopkins who explained the whys of it. Also along with the ANS problems, EDS can also cause raynauds symptoms (not the disease, that's a different story). Haven't heard of any real cures for the chronic pain level from EDS which is a real charming aspect and I think comes in a close 2nd as the most frustrating thing of the disorder next to the blood pressure issue, but the use of a tens unit helps a little but the biggest help is I think is doing PT to build up muscle around the joints. Good luck and well wishes sent your way.

Hi persephone I am sorry to hear that you suffer from Hemiplegic Migraines. You are the only other person that I have heard about other than my oldest who suffered from these terrible type migraines for most of her younger life. Her neuro at the time told me that it is a rarer type migraine with only 10% of 10% suffering from these type migraines. Did you know that you should not take imitrex for these type migraines? We learned the hard way, of course no one tells you this stuff beforehand right? Anyway, I wonder how many migraine sufferers have orthostatic problems in general. It must trigger it somehow I guess. This would be a great question for Karyn. I was told alot of EDS people suffer migraines as well as per our genetics doc. Our daughters have EDS III as well. I'm not sure how long you've had them but our daughter finally stopped experiencing migraines (knock on wood) as she got older and after taking a combo of meds to help stop them. In the beginning she was getting them 2xa week and were so severe that it always meant a trip to the ER for demerol or compozine (spell?). She started at approx age 5 and dx at 8 and didn't stop until 18 years old. She would also have visual hallucinations during these and always felt she had to urinate when she didn't really need to, docs would also think during some attacks that she was actually having a stroke due to symptoms presenting such as numbness and not able to move body parts extreme dizziness not being able to walk and we won't even go into the vomiting part....that was terrible! I don't think the ER docs ever saw what her face really looked like because she always had her head in a bucket. She would be out of it for days. I certainly wish you the best with these and hope they will subside for you as well as time goes by. Isn't having all these things grand? Good luck and well wishes to you.

Hi Merrill, Both my daughters had the Hep vacs without incident. Although I did find out just today that just because you have these vaccines doesn't mean your covered from getting it anyway. I was informed that there is a titer blood test that is suppose to determine if the vac worked and you have immunity built up or something like that....maybe someone else can explain better and clarify more on the subject. I was kinda shocked to learn that especially after a person has to have 3 sep shots for this vaccine. That would be a kicker for sure after going through all the shots to find out it didn't take.

Hi, If Chrissy is in college or about to attend college next year it might be wise to have this vaccine, I think they recommend it due to dorm life of the students and can be prone to a higher risk of menningitis. Both my daughters had this one before starting college. Along with Hep vacs in high school. They experienced no ill side effects from them.

Hi Ling, sorry you are feeling badly, sounds like what we feel like when our blood pressure is really low. We like to call it our 'heavy gravity days'. good luck and hope you feel better.

Hi Radha, Sorry to hear your feeling badly. Just to touch base on this, I don't have the links handy to provide the medical information on this but from what I've read, alot of people who have autonomic/orthostatic problems have drops in bp after eating. It's called post prandial hypotension, it can make you feel really strange until things level out, it's because the intestines require more blood volume during digestion I believe. Some people have postprandial hypoglycemia that occurs but there is some controversy on this one subject that has changed in belief system over the last few years by physicians from what I've read. Hopefully your doc will figure out what is going on soon, you may want to ask about food allergies as well to cover all bases. I know myself, that when I eat heavy carb and sugar breakfast I feel odd until things level out again especially if I eat pancakes, which I love to eat. I relayed this to my doc and was inform on what to avoid (food wise) to help this at least in the morning hours that is. When I can get to them, I'll find the links for you to view. Don't feel badly about contributing, you're fine. Everyone has their own ideas and suggestions that will help someone even if they are just popping in to see what's up. So don't let that stop you from giving your ideas and suggestions or even if it's just asking questions because it opens the matter up for discussion which is always a good thing. You have valued input as well. Have a great night and feel better.

Hi There are some things that can be tried depending on where your fibroids are located, how large and what type they are. for excessive bleeding there is ablation that can be done for that. Also, They can go into the uterus with a scope called a hysterscope to look at the fibroids and surgery can be performed to take out if it located on the inside of the uterus. If the fibroid is located within the wall of the uterus there is not too much else they can do surgery wise other than a hysterectomy from what I've been told anyway. Some fibroids will grow attached to the outside of the uterus as well but depending on where it is located doesn't effect the bleeding issues although it can effect the pain issue and other areas surrounding the uterus. Another thing to consider if you are having alot of bleeding and pain is Adenomysosis but this problem cannot be determined until after the hysterectomy other than diagnoses being made by clinical symptoms. And the only solution for adenomyosis is also hysterectomy or actually goign through menopause. I would say to do as much research as possible on the subject and talk again to your doctor about your options available to you maybe she/he will know other ones out there. About the endometrial biopsy, I would advise for you to have this done. It's a good way to make sure you don't have endometerial cancer going on that excessive bleeding can be a symptom of. It is not pleasant to have but necessary. They usually do it right in the office, I've had it done twice..got faint when they were performing the test but if they have no difficulty depending how the uterus is situated it's over pretty quick. here is a link for you...http://www.wdxcyber.com/dxppn011.htm best wishes....isn't it just grand being female sometimes?

Hello Do you notice there seems to be a lot of people with this problem that are teachers and medical professionals? Kitsakatsa, If you don't me asking, what type of anti-nausea medications do you take? I think alot of us seem to have the same difficulty in the morning hours verses nighttime, I know in our family, we do most of our physical things in the evening or late hours...it's usually when I come alive. Mornings are horrid so I don't even try to function much then. I changed my shift to a later part of the day which seems to work out best for me because when I worked early mornings, I wasn't worth much until about 2pm and felt awful all the time. But I also went part time due to health reasons, I felt physically I just couldn't keep up and usually when I pushed myself I paid dearly for it. Although Midodrine helps a great deal.

Hi Morgan, I don't know what might be causing your pain but I get pain in the groin,hip, thigh, pelvic area and when this started first occuring, after many, many exhausting tests(which were quite painful) I found out that the pain was referred pain coming from the spine pinching nerves and inflamming everything only mine was all right sided. I orginally did not have any pain in the spine area to begin with so no one thought of that area as the culprit but they were looking at all of the other areas which was NOT fun. I wish you the best of luck and hope they find out whats going on soon.

Hello, thank you for the replies...I will have to check on the bracelet you mentioned on your reply. I think that it couldn't hurt and couldn't be any worse than what ever else we've tried. I've read that the nausea problem doesn't cease just because your pressure seems somewhat normal. Strange... Another thing I find weird is that both my girls have this problem and only one has the nausea problem. It has improved somewhat since taking Midodrine but she still has terrible bouts of it often enough to make life miserable and hard to function at times. I wish there was a better solution out there for the nausea than what seems to be offered. You get a choice of feeling nauseous and can't do anything or feeling doped and can't do anything....boy what a choice . Any one have any natual herbal remedies other than ginger...(didn't work). She has Ulcerative Colitis as well so she is taking a ton of meds for that on a daily basis to keep that at bay. I also found this article...I'm not sure if anyone has seen it before but here it is anyway...I thought it was interesting.. http://www.ncf-net.org/library/freeman-OI-2000.htm Hope everyone is having a feel good day .

Hello to all....I'm just curious ; just how many people who have this problem suffer from terrible nausea and GI problems? How many have chronic nausea? And what medications have you tried for the nausea that has worked for you without knocking you out? I have read that alot of the anti-nausea medications that are prescribed can actually lower your blood pressure as a side effect which is kind of making things worse in the long run I think. There has got to be a more effective way out there somewhere, to deal with the nausea that seems to run hand in hand with this problem other than medicating a person into a stupor. I have researched many areas but come up empty handed in the information department in this area. It all keeps coming back to the use of anti-nausea medications such as phenergan and such type meds. Even looking into effective treatments for nausea that is used in cancer patients but the ones I've looked into effects the blood pressure as well. Is the dysautonomia causing a motility problem that is causing the nausea? Or is it just that the blood pressure is so low that a person will feel nauseous? Just thought I would get the opinion of all you nauseous people out there. Thanks for your opinions in advance. Hope you all are having a good day.